Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

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Wednesday, January 25, 2017

Surgery Details

Pre-op appointments are done. My mom is on her way back to Ohio. And we are ready for surgery! Kinda...

In case you missed it, I'm having surgery tomorrow to place a J tube in my intestines. My current feeding tube is what is called a G/J tube. I have one hole that goes into my stomach with a 2-in-1 tube to provide access to both my stomach and intestines. For a variety of reasons, this type of tube is no longer the best option for me. So tomorrow, I will be having a separate J tube placed. Going forward I will now have 2 tubes, the G will remain where my current tube is now and the J will be wherever the surgeon places it tomorrow.

I spent the better part of yesterday going to 5 different pre-op appointments to make sure everything is all set for my surgery. It was a LONG day...and not just because I had so many appointments...Of course my body likes to choose the best possible times to be so sick...I woke up yesterday morning so nauseas and barely able to stand. I honestly wasn't even sure how I was going to be able to leave the house...Obviously I made it to my appointments, but it was tough.

The day started with blood work and an appointment with an internal medicine doctor who has to sign off that I am fit for surgery. I found this to be just a matter of going through the motions because the reality is that I need this surgery. Even if my blood work comes back weird or the doctor feels there are added risks (there are...), we have to do this anyway. The doctor was very nice and listened well. We discussed her concerns with my complex history and my concerns with the surgery. She wasn't the one making any anesthesia or actual procedural decisions, but she was able to put in my chart that I absolutely cannot miss any doses of my medications and make sure there are standing orders for my emergency medications for the nurses to see when I am admitted after the surgery. Other than that it was just taking vitals, and the routine questions of whether my blood pressure is always low and if I can ever get a pulse ox reading...and of course, the doctor not realizing Leni was in the room until we got up to leave. I don't think that ever gets old =P

After the internal medicine appointment I saw anesthesia. Originally I was scheduled to just speak with a nurse anesthetist, but I had asked specifically to talk with one of the doctors since this is a huge concern for us going into surgery. This was a very productive appointment, and I think we are as prepared as we can be going in to tomorrow. We will be using a new anesthesia medication that I have not had before (which is good considering I have not done well with any so far...), and I think we have a good pre-treatment protocol set up. We are also going to be trying some continuous medications during the procedure to hopefully keep any reactions under control, so I'm hopeful that they are on top of things. Of course, the doctor I spoke to yesterday isn't the one who will actually be in the room with me, so we'll probably have to go over everything again tomorrow...but at least it's a step in the right direction and everything WAS added to my chart, so who knows, maybe we'll be surprised and the anesthesiologist will come in tomorrow super prepared.

We also made the decision NOT to do this as an outpatient surgery for a couple of reasons. The main reason is that I may need IV medications to keep any mast cell reactions under control. Since I am having J tube surgery, my intestines may need a few days of recovery before I am able to absorb my liquid medications that I need to manage my mast cell disease. We do not want to risk anaphylaxis because my intestines are not ready to absorb my medications! The main criteria to be met for discharge is that we are able to manage all my mast cell symptoms with my liquid meds through the new J tube. The other main reason is pain management. J tube surgery is reported to be a bit tougher than G tube (what I had before) so we are not sure if I will need any IV medications to keep pain under control. Pain is a mast cell trigger, so again, the goal is keeping my mast cells under control during recovery. We are hoping that I will only need to be admitted overnight, and we will be on our way home Friday, but the GI nurse said many people end up staying 2 nights...we're just going to have to wait and see!

My final appointment of the day was with the GI surgeon's nurse to discuss the specifics of the J tube placement. Of course, I couldn't make it through the whole day without any scheduling issues...For whatever reason, they scheduled my pre-op appointment at the same time that the nurse was in meetings...so I waited almost 2 hours past my appointment time to see her. She was very apologetic and we got everything done we needed to, but I was beyond exhausted by the end of the appointment. Since I've had a feeding tube for 2 years now, she didn't have to go over all the tube feeding details. We just discussed where the surgeon typically tries to place J tubes, and his back up locations if my anatomy won't cooperate for his first choice. We talked about how we will manage my hypoglycemia the morning of surgery, and tried to schedule me as early as possible. I'm excited that my G tube will be exchanged for a button style tube which means no long tube hanging down! Eventually the J tube will be a button as well, but I have to have a long tube initially to allow the stoma to heal completely. In 6-8 weeks, once things have healed, we will replace the long J tube with the button. We have set up consults with the home supply company to come by on Friday to make sure I have the supplies I need for my new tubes so I can keep running my feeds with minimal interruption.

And that's it! Everything is in place, and we're as prepared as we can be. I'm definitely nervous...I don't think I'll ever go into any of these procedures without some nerves...but I'm not anxious. I know God is in control, and we are trusting that He is walking with us every step of this crazy mast cell adventure. In the past week, a couple different friends have shared these verses with me. Numbers 6: 24-26, "The Lord bless you and keep you; the Lord make His face shine on you and be gracious to you; the Lord lift up His countenance to you and give you peace." These are also the verses my parents prayed over me and my brother every night before bed when we were growing up. God has been so gracious to me and given me peace that is beyond understanding. My surgery tomorrow is no surprise to God, and I can be at peace knowing He is holding me in His arms.

I will try to post an update at least to Instagram sometime Thursday evening if I'm able or Friday (or my mom or Nick will update). I'll do a full blog post once I get home. And don't forget, voting and suggestions are still open to name my tubes! Time is running out! I'll share the names in that first blog post after surgery (and give a shout out to whoever suggested the chosen names!), so get your input in now!

As always, thank you for your prayers. It is such a blessing to know I am not going it alone. Not only do I have incredible family walking this road with me, but so many friends also being a part of our lives through prayer and encouragement. Thank you!